When Nobody Believes You

As published on Pain News Network (www.painnewsnetwork.org) on April 30, 2015


“It’s all in your head.”

“Your doctors are wrong.”

“You don’t really feel as bad as you say you do.”

“You must not really be in that much pain because you look fine.”

These words are far too common in the ears of chronic pain patients.  They can make one feel isolated, alone, and as if nobody cares.

One of my patients told me the other day, “My husband doesn’t believe I’m in as much pain as I say I am.  He thinks it’s all psychological.”

A week earlier, a friend told me, “No matter how many doctors and specialists I have been to, my family still does not believe my diagnosis.  They think it is wrong.  I feel like I have to hide my pain around them.”

I listen to story after story from patients and friends with chronic pain stating the same thing: that family members, friends, doctors, co-workers, teachers, etc. do not believe they are in as much pain as they say they are. Often it’s because they look fine on the outside.
 

 

They have told me they feel like they are whining about their pain, that people just brush them off or that they feel guilty for even talking about their pain. 

They ask me, “What’s the point? I feel like nobody believes me anyway.”

No matter how many times I hear these stories, it still angers me.  Chronic pain is not something that anyone should feel like they have to convince another person of.  It is not something to feel guilty about and it is not something anyone should feel like they have to hide -- especially from those closest to them.

Unlike having diabetes, cancer or a broken arm, most people do not understand chronic pain and the effects it has. And many who think they understand are misinformed.

What they often don't understand is that chronic pain sufferers don’t always look sick.  Because their pain is chronic, they have learned to go on and live their daily lives to the best of their ability.  Just because you can’t physically see someone’s pain, that doesn’t mean it is all in their head and it doesn’t mean they are fine.

And being told that their doctor must be wrong or that they should hide their pain only makes things worse.

When someone is diagnosed with chronic pain, they want more than anything for that diagnosis to be wrong.  However, more times than not, the diagnosis they receive, especially if they have been to multiple doctors, is correct.  After the shock and denial has worn off, that patient, more than anything, is going to need support and acceptance, not criticism and disbelief.

Being diagnosed with a chronic condition is life changing, even for the strongest individuals.  It means finding a new normal, contending with things that are unimaginable and going through life feeling like those closest to you will never understand.

It means trying to make sense of this new person they have been forced to become and the new reality they are now living.  All of these things could be managed just a little easier by hearing the simple words, “I believe you.”

Common Misconceptions About the Chronically Ill

Misconception #1: You look fine therefore you must feel fine

This is probably one of the biggest misconceptions about the chronically ill. People with a chronic illness may look fine on the outside but that doesn’t necessarily mean they feel fine on the inside. Not everyone who has a chronic condition is in a wheelchair or walks around with a limp. In fact, most chronic illnesses are invisible.

Misconception #2: It must be so great not to have to work

Sure, it sounds great to a lot of people not to have to work…if they had the choice. Most of the time, people with chronic illness are not working because they can’t. Most people with chronic illness would gladly trade their illness for the 40 hour work week again.

Misconception #3: Getting more rest will make you feel better

For a lot of people with chronic illness, rest is helpful. But it may not make them feel drastically better. It’s not going to make their symptoms go away and it may not mean that they are then going to feel well enough to go to an event or social engagement.

Misconception #4: Chronically ill people are just lazy

Chronically ill people are not lazy. Most wish they could engage in the mundane chores and tasks that most people complain about. They would gladly do the dishes, take out the trash, and pick up the dog poop if they could. They would be happy to work eight hours, take the kids to practice, clean the house, help the kids with their homework and cook dinner all in one day if it meant they didn’t have a chronic condition that was keeping them from doing these things.

Misconception #5: If someone with a chronic illness is out living their life they must not really feel that bad

Just because someone with a chronic illness isn’t at home in bed all of the time doesn’t mean they’re not really sick or that they don’t really feel that bad. There are still things that need to be done despite having a chronic illness, like getting a few groceries or walking the dog down the street. People who have chronic illnesses do these things despite feeling horrible some of the time. It is a part of life with a chronic illness.